Last year the Donna Louise cared for 242 families with 392 brothers and sisters, delivering 1524 nights of respite care and 1077 hours of support for families in their homes or in hospital.

With The Sentinel, The Donna Louise will be launching its #SoNotTrue campaign, aiming to dispel myths associated with the charity that cares for young people with life limiting illnesses.

You may think the Donna Louise is a sad place to go to, or that it’s a place where people go to die. Many people think this, but this simply isn’t true. And who better to tell you than those who have accessed their amazing services.

In a series of features this coming week, The Sentinel speaks to parents of children who have been through the Donna Louise at Trentham , to find out what the place is really like, and how different it is to what people think.

When Paige Garrington was a baby she could suffer upto 100 seizures per day.

The brave youngster was born with extra ‘bumps’ of matter on the brain which cause epilepsy – a condition called tuberous sclerosis.

And mum Becky Aldersea, of Hanford, says she was left feeling ‘helpless’ as Paige spent the first three months of her life being fed through a tube and suffering several seizures. The 29-year-old said: “It was horrible. All I could do was express my milk for her.”

Paige was eventually allowed home and medics were able to formally diagnosis her condition and reveal it was a gene mutation.

Becky said: “She was continually fitting and could have up to 100 seizures a day.”

Becky Aldersea and Michael Garrington play with their daughter, Paige, at the Donna Louise

When she was six months, Paige, who was later found to have a brain aneurysm, was referred to the Donna Louise by a community nurse.

Becky went to the Trentham head base to have a look around – and admits she was blown away. She said: “It was amazing. I was gobsmacked.

I didn’t expect it to be that big or as friendly. “It’s now my second home and I’m totally confident in leaving my child there. She goes in there for a few nights, as well as accessing day care and also emergency stays. It’s not just respite.”

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She said: “The fact that people think it’s just a place where people go and die is completely far from the truth. You go in and you can hear children laughing. The children in there could have life-limiting illnesses – it doesn’t have to be terminal. By offering services beyond the age of 18 years of age the charity has put my mind at ease for the future.”